The Joy of Acceptance

Layne-JudyLayne and Judy Coon are great examples of accepting others. I lived next door to them for sixteen years and also worked with Judy at Zion’s Bank for three of those years. I know Judy as a co-worker as well as a neighbor. I can’t think of another person I know who’s better at accepting others. Maybe it comes naturally to Judy because of her brother, Ricky, who had Down syndrome, Autism and Alzheimer’s. She was Ricky’s primary caregiver for the last sixteen years of his life. Some of those years she was still raising three children. She also helped raise my two children. Our son, Christopher, was best friends with their youngest, Tony. Our daughter, Katie, often played with their older daughter, Becky. When our accident happened, Judy was there for our children after school and whenever needed. Through it all, she had the love and support of her husband, Layne. The two of them are angels among us and can be seen with smiles because of the love and service they give to all.

I learned from them that accepting our situation would allow us to feel joy. By focusing on the positive, we can make the best of any circumstances. Tim Gray wrote a wonderful story about Ricky in 2010, a year before he passed away. Some of it was published last Sunday and this is more of the story.

Judy says she learned patience through her childhood interactions with Ricky. “I think it’s natural for a child to be patient with another child who has problems. It’s just automatic now.

Love Conquers AllJudy discovered the best way to help Ricky from watching her parents. Ricky was extremely stubborn and her father was strict with him, but her mother found a better way to reach him. “My mom learned that all she had to do was put her arms around him and love him and he would melt. Ricky would do anything mom asked, Judy said. Ricky can often be seen extending both arms out to people, motioning for a hug. Never a hugger, Judy learned to be one for Ricky.

Like most people, Ricky has good days and bad days. The difference is with Alzheimer’s, Ricky’s bad days are beginning to increase. On a good day, Ricky’s facial expressions and gestures are often like a joyful child pleased with something they did. He can’t wait to show what he’s accomplished to anyone in sight, especially Judy. On a bad day, Ricky looks worn out and perhaps just wants to be left alone. Sometimes he cries quietly with a look of inconsolable confusion on his rapidly aging face. Each time Ricky finds Judy all is well again.

Accept othersRicky enjoyed doing dishes for Judy. “He would take dishes out of the dishwasher and put them away. But, as his Alzheimer’s has gotten worse, the results were mixed. Ricky started taking cups off the counter that were dirty and putting them away. We started watching for dirty cups and stuff,” Judy says laughing, even though she knows it’s not funny.

“When Ricky was a boy, he could walk for miles and find his way home. He had a really good sense of direction. But now, Ricky has a hard time finding his way to the bathroom and at home he started asking permission to go to the bathroom.” Judy says.

Some interesting facts Tim Gray included in his story:

Down syndrome occurs in approximately 1 in 800 live births, according to the National Association for Down syndrome. People with Down syndrome have 47 chromosomes instead of the normal 46. Characteristics include low muscle tone, a slightly flattened facial profile, and an upward slant of the eyes. Roughly 40 percent of children with Down syndrome have congenital heart defects.

Alzheimer’s affects 50 to 70 percent of individuals with Down syndrome by the time they reach 60 years old, according to the Alzheimer’s Association. The progression of Alzheimer’s in those with Down syndrome takes approximately 8 years, with symptoms so slight it can go unnoticed for years. The average life expectancy for people with Down syndrome is 55 years old.

Autism is characterized by a lack of development in social interaction, language, and behavioral issues, according to the Mayo Clinic. People with Autism often retreat into their own world. They may also repeat words or phrases without understanding how to use them. Behavioral issues sometimes include performing repetitive motions such as rocking, spinning, or hand flapping.

I want to follow Judy and Layne’s example of accepting others. By doing so, one finds joy and can see the true beauty in every person.

Working with Ricky

Over a year ago, Life with Ricky was written by Judy Coon and published on Uniting Caregivers. At that time, her friend and co-worker shared with me a story he wrote for a school assignment in August 2010. With his permission I share parts of his story with you. 

Written by, Tim Gray

Ricky Cromar

Ricky Cromar

At 1:00 p.m. Monday, Ricky Cromar picked up his worn, green Coleman cooler and heads for lunch. By the time he arrives, 25 or so warehouse workers have packed the break room. To reach his final destination, Ricky had to walk down a long narrow hallway past the conference room and call center, bend around two corners, a couple of restrooms and a flight of stairs. Along the way he had to open two closed doors and limp through one that was already opened.

Ricky can’t count the 150-yard trek or compare it to the miles he often walked alone as a kid. But now as a 61-year-old man with Down syndrome, Autism, and Alzheimer’s, it’s quite a trip. Especially when one leg is a few inches shorter than the other and you’re going blind.

“Here you go buddy,” Janelle says, as she places Ricky’s oversized red University of Utah jacket around his shivering shoulders and rocking body. Ricky doesn’t say a word as he flashes an exaggerated grin of gratitude at the twenty-three-year-old shipping supervisor. She’s accustomed to making her way around the 125,000 square foot warehouse and doesn’t mind the 300-yard round trip back to get his jacket.

For those that come in contact with Ricky, it’s a reminder to be thankful for the ability to do the things he struggles with daily. For many, his accomplishments are an inspiration. For Ricky, who often displays pride in the things he does, the walk just gets him where he’s going. Today, like most days, Ricky eats quietly alone. When he needs assistance, or an extra snack, there are plenty of helping hands. But the ones he depends on most are attached to Judy Coon, his sister and primary caregiver for the past 15 years. Judy is the bookkeeper for Pro Star Fulfillment, a shipping and handling firm for infomercials. She shares a 480-square-foot rectangular office with Ricky and he sits at a black metal desk next her.

While Ricky eats, Judy usually shares lunch with Layne, her husband, who is also the V.P. of Pro Star Fulfillment. They generally eat in his office, which is just around the corner from the break room. While they are both involved in Ricky’s care, Judy clearly has the lion’s share.

In a lineup of seven siblings, Ricky is the second oldest, Judy is third. She took the job as full-time caregiver about a year before their dad died in 1996 and eight years after their mom passed away. Growing up, Judy never thought much about Ricky’s condition. “He was my older brother and has just always been there,” she says. Judy would pay him to do her chores, including the dishes. She would then drive him to buy hamburgers, a major passion of his, which started their bond together. As an adult, Ricky still cleans up the kitchen all the time for Judy.

Before work Judy rides a bicycle 30 minutes, which is about the time it takes Ricky to choose a shirt from his closet. As he has developed Alzheimer’s, most things take longer and are often clouded with confusion. He is wearing gray jeans, rolled up the same six to eight inches his mother rolled them up for him as a child and as an adult. That’s Judy’s job now, along with helping Ricky perform other personal care activities most people take for granted, including electric shaving.

Before Alzheimer’s, Ricky was incredibly organized, especially how he placed pants in his drawers and how he hung shirts in his closets. They were all color coordinated. Now Ricky’s drawers are in chaos.

Earlier today, Judy and Ricky made lunch at home together. It’s something they do on days they don’t have to be at work early. “Rick, do you want one sandwich or two?” Judy asks. “Two,” he says, unaware he is flashing a peace sign. Judy gently hands him four pieces of bread she baked,  which Ricky carefully lays out on the oval wooden kitchen table. Sitting down, a careful exercise itself, he spreads peanut butter slowly on one piece, going well over the edges. Unhurried, he spreads Welch’s Grape Jelly on two pieces and puts the bread together, but not very straight. Judy lets him eat them however he makes them. Ricky deliberately places the sandwiches into a plastic container and then into “Box,” the nickname he gave his Coleman cooler. Next, he methodically puts a Yoplait chocolate raspberry yogurt into the cooler. Pop-tarts, one chocolate and one blueberry, are today’s dessert and a Minute Maid drink completes the meal.

At 1:49 p.m. Monday, most of the break room has cleared as the warehouse employees have returned to their work stations. As Ricky finishes the walk back to his office, he stands bent over his desk with a clouded look of concern. Ricky’s chair is missing. Jared borrowed it while he was gone, but Ricky finds it in good hands, sitting next to Judy. Ricky has an hour for lunch. He made it back before his time was up.

“Good lunch,” he mouths, with a wide-grin and raised eyebrows, like he just pulled a rabbit out of a hat. It’s an expression he displays often at Pro Star. Judy understands what he is struggling to say and smiles back.

Judy gives Ricky daily jobs at work, including stuffing DVD’s into small white containers that will ship to customers looking for long-term healthy weight loss. Ricky is also in charge of shredding files, one of his favorite assignments, but he spends much of his days coloring with the same steadfast concentration he displays making his lunch. Jared Starling, CEO of Pro Star, personally delivers a $15.00 check to Ricky every two weeks for his hard work and Ricky lights up.

Ricky takes tremendous pride in his work. Craig Faux, corporate sales manager for Pro Star , wrote, “When I have something going on that is causing me stress or an issue I need to think through for a minute, I go see Ricky.  He stops, but only for a moment, shakes my hand, shows me what he is working on, smiles at me, then says he needs to go back to work. I always feel better when I leave.”

On Tuesday I will share more from Tim Gray’s story.

 

Life Does Not Have to be Perfect

Three tips from Barbara Larsen’s Story, Joyce, an Angel in Our Home

I see a girl not a condition1. Feelings of failure are normal. I have known Barbara Larsen for many years. She is a neighbor and dear friend. I never knew she felt like a failure nor did I ever think of her this way. I only saw the kind, loving sister she is. I am grateful for her honesty and it helped me realize that sometimes we just expect too much of ourselves.

2. Frustration is common. It’s understandable and okay as long as it’s dealt with in a positive way. Find outside help from family, friends, church or other organizations. Share the responsibilities and the blessings that come with it. Taking a break is necessary for overcoming frustration.

3. Care Centers can be the best solution. Barbara said, “It’s okay, if it comes to a point you can no longer take care of your loved one in your home. Let the professionals do it. There came a time when I knew others could take better care of Joyce than I could. It was difficult to let her go, but we still loved and supported her at the care center even though it was hard to watch her slowly leave us.”

I really appreciated the stories shared this month by three guest authors of a mother, grandmothers and a sister. Since it is the month we celebrate Mother’s and Memorial Day I thought these three stories would be a perfect match for this month. I learned a lot from each one and based the Tuesday Tips this month on their stories. Each caregiver’s loved one has passed into a better place where health is no longer an issue. Each guest author stated that caregiving was a lot harder than they thought it would be and needed to seek help from others. I echo this feeling and add, it’s a good thing we don’t realize how hard it will be or we might not be so willing. I was impressed that each one voiced the love, personal growth and appreciation for the opportunity to give care even though or possibly because it was the hardest thing they’d ever done.

Life doesn't have to be perfectThese three stories helped me realized how similar caregiving is to raising children. Not only do they have like responsibilities, but when you’re in the middle of doing it—it seems like it will never end. However, it eventually does. Just like our children grow and leave our homes—our loved ones move on and return to their heavenly home. The responsibility does end and when it does there are things we will miss. Dianne, Julie and Barbara’s stories prompted us to appreciate the time we have and to make the best of our circumstances. Hopefully, in the end we won’t have regrets and we will be at peace, realizing we did our best.

I appreciated the honesty of each one as they expressed their overwhelming feelings and frustration at times. Thank you for reminding us that life doesn’t have to be perfect to be wonderful and neither do we.

Joyce, an Angel in Our Home

Written by, Barbara Larson

First of all, I want to thank this wonderful website and those involved with it. It is inspirational and healing, for those of us who are or have been caregivers to those we love.

Barbara & Joyce 2My name is Barbara Larsen and I grew up with seven other siblings in a small home in Salt Lake City, Utah.  We didn’t have much but we were very happy. I shared my bedroom with 3 of my sisters. My sister, Joyce was the fifth child and two years older than I. She was born with Down Syndrome and her mentality only reached that of a 4-5 year old. She was very challenging for my parents, as I remember her tantrums and nothing would control them. She scratched herself and made herself bleed. She wasn’t potty trained until age nine along with many other complications.  There was never any complaining. My parents did get
frustrated, but the love shined so bright it would wipe away the frustration.

Joyce CupcakeI grew to love my special sister and I remember the day I told her I would always take care of her.  As my parents grew old it was hard for them to take care of Joyce and they worried about who would take of her when they passed away. I assured them I would take care of her, only remembering the good times, when her sweet personality made me laugh, and how much fun she was to be around. I thought about how great it would be to have her with me.  I pictured it like a Cinderella story.

Larson Family,Joyce & ParentsMy dad passed away in 2007 and a year later my mother needed extra care from a fall she had taken. Her leg would not heal, so she went to a care center and Joyce came to live with me, my husband, Leroy, and our six children age ranging from seven to eighteen. My sister was about fifty-three at the time, which is considered old for a Down Syndrome person.

It was wonderful for a year. Joyce would go everywhere with us and my kids would play with her. I taught music lessons and she loved listening to the music. Our boys were active in sports and she enjoyed going to the school sporting events and watching them play. Our girls were in choir and drama and Joyce was delighted to watch them participate in programs and plays. She was just part of the family and we loved it. There were challenges that first year, but we enjoyed having her with us.

Joyce ChristmasThe following year her seizures became more frequent and she needed 24 hour care. My Cinderella story wasn’t happening. This was the hardest thing I have ever done. I still had young kids at home, busy with school activities and I taught music lessons. How was I going to do this?  I remember the days I was frustrated, and would always think of my mom and dad and their example of patience and love, and it helped me through it. Also humor helped us get through the trying days. My children learned to love and serve her. They did things I would never have asked them to do. It was amazing how serving Joyce brought out the best in everyone.

I also turned to siblings who would give me breaks by taking her during the day and sometimes on weekends so I could just be a mom. I let half my music students go, which relieved some of the pressure, but Joyce didn’t want to eat anything. Everything made her sick. She had no control over her bladder and I was changing her quite often. She had seizures regularly, and I sometimes felt I couldn’t take it another day.

Well, that day did come when my youngest son had been in a serious boating accident at Lake Powell and had to be life flight to Primary Children’s Hospital which was 388 miles away. This caused him and me post-traumatic stress. I remember the day I lost it with my sister and yelled at her. She didn’t deserve it. It made me so sad I cried as I hugged her and said how sorry I was. I began to fall apart because of all the stress. Exhausted, I finally told myself I couldn’t handle everything any longer.

I will never forget the day I had to tell my angel sister good-bye as my sister in-law drove her to the care center. I felt like a failure. I thought, Why couldn’t I do it? My mom took care of her. What was wrong with me?  I cried many times about this.  I visited her often at the care center watching her slowly deteriorate was tough. My angel sister passed away about 1 ½ years later.  It has taken me a long time to look back and be okay with all that happened.

I want others to know that it is okay if you become frustrated, as long as it’s dealt with in a positive way. It’s okay to say “I can’t do this anymore.” Find outside help, because sometimes it is the best solution.  It’s okay, if it comes to a point you can no longer take care of your loved one in your home. Let the professionals do it. There came a time when I knew others could take better care of Joyce than I could. It was difficult to let her go, but we still loved and supported her at the care center even though it was hard to watch her slowly leave us.

Barbara & JoyceAfter all this, as I look back, I still feel her presence in our home. She blessed our lives so much and I would do it all again. The only things I would have changed are my expectations and the realization she wouldn’t be around much longer, so enjoy the time I had with her.

My husband and I, along with our six children have been changed for the better by having the opportunity to care for our Joyce.

In loving memory of Joyce Dibble.

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Barbara,Leroy, Joyce & Mom

Thank you Barbara for sharing your touching story. I don’t believe Joyce, is the only angel in your home—you are also. She was so lucky to have so many people love and care for her. What a great example you are and a huge difference you made in Joyce’s life. You are an angel sister.

Life with Ricky

Written by, Judy Coon

Ricky Cromar

Ricky Cromar

Ricky Lee Cromar, who is my older brother and the second of seven kids, was born May 17, 1949, with down syndrome and autism.  It was my parent’s choice to keep and raise him rather than put him in an institution, which was customary at that time.

There arose many challenges, especially in the beginning. Ricky was incredibly stubborn as a young child, so to teach him anything was very difficult.  It took my dad, until he was four years old, to get him to feed himself. It wasn’t that he couldn’t do it, he just wouldn’t.  Even simple things like asking Ricky to go wash his hands, he would absolutely refuse.  My mom learned early on that if she went up to Ricky and gave him a hug and told him that she loved him, and then asked him to do things, he would do them without any resistance.

My parents insisted that Ricky be treated like the rest of us kids.  If we had to do chores, so did he. If we did dishes, so did he.  It took longer to teach him, but when he learned his responsibilities, he was very consistent and willing to do them.

We were also taught, as kids, not to leave him out of our games that we would play.  We were to include him and patiently teach him so he could play with us.  Ricky’s mental capacity never surpassed a three or four year old, he was full of love and always tried to do his best at whatever he did. He loved to make others happy and he was such a blessing to have him in our home.

When my parents passed away, Ricky came to live with my husband and me and our three kids. He had stayed with us many times, so there wasn’t much of an adjustment.  While he was with us, he had the opportunity to overcome a lot of his fears.  One of which was flying on an airplane. In 2003, my husband, Layne and I were asked to go to Hawaii for a couple of years and start up a new warehouse for the company we were working for. Knowing of Ricky’s fear and stubbornness I asked George, our oldest son, go to the airport with me to help me out with Ricky since Layne had to fly out a week earlier. George and I were able to get Ricky up to the gate but once there, he absolutely refused to go another step.  After trying everything we could, I said a silent prayer. Just then one of the airline employees came up to Ricky with a wheelchair and asked him if he would like to go for a fun ride. He smiled and sat down in the wheelchair and he pushed him on to the plane.

Over time, Ricky learned to trust me. And with that trust, Layne and I were able to get Ricky to go on boats and trains and to go to new places. His fears started to diminish and he enjoyed more things.

When we moved back from Hawaii, Ricky’s health was slowly starting to decline, so I started taking him to work with me.  He had his own desk in my office and the company would pay him to shred papers and other small jobs.  Everyone knew him and loved him and they would always walk away with a smile on their face after they visited with him.  Ricky had the ability to touch the lives of other people and make them feel happier.

His health continued to decline and Ricky faced many new fears without much resistance. He started having seizures and other problems that he couldn’t understand.  But he seemed to have a relationship with God that he could understand.  There wasn’t anything that I could do or say that would comfort him, but he was indeed, receiving peace and comfort and was able to go through whatever came his way.

Ricky passed away October 9, 2011, and just before his passing, he was extremely happy and excited about something.  The spirit that he brought into our home was amazing and it was quite an adjustment not to have him with us anymore. Even though there were many trials and sacrifices made, he was never, ever a burden and the blessings he brought into our home far out-weighed whatever trials there were. We feel very lucky to have had him in our lives and the lessons we learned from him will always be with us.

Thank you Judy for sharing your story. What a wonderful sister you are and brother-in-law Layne is. Ricky was a lucky man to have been surrounded by your family’s love. Also, you were a great next door neighbor to us for sixteen years when we lived in Sandy, UT. You and Layne have the biggest hearts and we love you both. We appreciate your example and help with our two kids.They always loved being at your house.